Hospice UK and Marie Curie have partnered with Same But Different to create an honest, raw, and inspiring account of what matters most to people at the end of life, based on experiences of people receiving and delivering palliative and end of life care.
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The result is the What Matters Most Project and exhibition inspired by Same but Different photographer and director, Ceridwen Hughes’ own experience of end-of-life care, when her mother died in 2020.
Ceridwen’s experience of the difficulties in trying to access the right end of life care for her mother and hearing from the experiences of others, has led her to call for an open and honest public discussion about the realities of dying and bereavement, and greater investment in care so that no one dies alone, in pain and unsupported.
Through raw and honest interviews with people who have been given a terminal diagnosis, their loved ones and care givers, Ceridwen and the team at Same but Different have created a thought-provoking film and atmospheric exhibition with the intention to encourage discussion around dying, a subject that is often avoided until it is too late.
Living with dying
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In collaboration with Hospice UK and Marie Curie and with support from the National Lottery Community Fund, Same But Different were able to talk to others with a terminal diagnosis and their relatives to understand what a difference it can make if the right support is available.
They heard from a huge range of people to find out what matters most to them at the end of life. People of all ages, living with terminal diagnosis, supporting loved ones at the end of life, and palliative and end of life care professionals shared their hopes and expectations
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Same But Different spoke to many storytellers
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Megan, who is living with ocular melanoma, speaks in the film about adjusting to life with her diagnosis and what it means to live life to the fullest whilst also preparing for death. “It can become overwhelming because you don't take that moment to actually stop and connect with the people around you. To me, what matters most is defining what your definition of success and quality time is, and not letting anybody else influence that. If you want to spend the next however long you have sitting at home with your cat and your daughter, do that. If you want to go travelling to every country in the world, do that, but don’t put a pressure or an expectation on yourself just because you are dying. You are still you. You are still the person you were before.”
Philip, whose Mum, Shirley, received palliative care at St Kentigern’s Hospice in North Wales shared his experience of caring for her at the end of life. Philip and Shirley found that having frank and open conversation about death was incredibly positive. “She's wanting to plan her funeral music, what her coffin will look like and what she wants to happen to her. We've tried to involve her and she's liked being a part of it. I think that that's what she's found very empowering, she is the sort of person that wants to be in charge of what happens to her and she can. That’s very special, it’s a very special time of life.”
Dan, who worked as a GP in North Wales for over 30 years, seeing multiple generations of families needing care, spoke to the film about the importance of listening to individuals. What matters most to Dan is the patient and always has been. “For me, the most important thing was getting all the people who could make that death better and more somehow palatable for all involved. That the patient's wishes had to have been respected.”
For Marie Curie nurse Angie, the most important thing at end of life is being there to support someone through it. Angie works nights, visiting the home of the patient that she will be caring for at the time, giving peace of mind to families, when they need rest, that their loved ones are cared for. Angie sees what a difference it makes to families and friends if they know there is someone there at night to support their loved one, providing care to someone who is dying, and peace of mind to their families. “We come into the world with support, we should leave it with the same level of love and support.”
What needs to be done?
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Ceridwen and the team at Same But Different are calling for greater investment in care so that no one dies alone, in pain and unsupported. The film highlights the need for this, plus open and honest public discussion about the realities of dying and bereavement, so people can talk frankly about what matters most to them at the end of life.
Matthew Brindley, Policy and Advocacy Manager for Wales at Hospice UK says: ‘The interviews and film put together by Same But Different make it clear that having open and honest conversations about death and dying can make these incredibly tough times a little easier for people living with dying. At Hospice UK we’re incredibly proud that we have been able to support this project to learn what matters most to people at the end of life. Now, we need to see better investment in palliative and end of life care in Wales so everyone can access the care they need when they need it.”
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